DCAL, Deafness Cognition and Language Research Centre

A unique project working to improve life for Deaf people with dementia
Regular DCAL newsletter readers will be familiar to some extent with the Deaf with Dementia (DwD) research project that we reported on in the Spring and Autumn 2010 newsletters. This unique joint project which started in April 2010 (and will finish in December 2012) aims to improve early diagnosis and management among Deaf people who use British Sign Language (BSL). It is funded by the Alzheimer’s Society, and is a partnership between the University of Manchester, University College London (UCL), City University London and RAD (Royal Association for Deaf People). DCAL researchers are involved from UCL, as well as DCAL associates based at City University London. The project is led by the University of Manchester.

This research study is the first of its kind anywhere in the world. The team that is carrying it out encompass both Deaf and hearing researchers, and a wide range of professional backgrounds (including social work, speech and language therapy and clinical psychology) as well as multi-disciplinary academic excellence in dementia, Deaf studies, linguistics and neuroscience.  The team also includes a key specialist service provider.

Good progress for DCAL’s study area

Within the DwD project there are three studies being carried out. DCAL/UCL is primarily responsible for Study1 which focuses on the Older Healthy Deaf Brain. This study includes developing a profile of normal ageing within the Deaf Community from a cognitive perspective. This will be used to develop a screening instrument for dementia in BSL that is culturally appropriate and that is normed for the Deaf population.

DCAL is glad to let readers know that the data collection for the cognitive screening instrument has now finished so that we have norms for healthy Deaf people. A test is now being used clinically to check the scores of people referred for cognitive difficulties against the normal range for their age. This means that in conjunction with
DCAL, the National Hospital for Neurology and Neurosurgery (a UCL Partner) in Queens Square, London can offer appointments in their Cognitive Disorders Clinic for Deaf referrals. Appointments are for patient care rather than data collection. For more information about this clinic please see page xxx of this newsletter.

DCAL revisits the England Deaf Derby and Joan club

Previously we reported on the DCAL research team’s trip to the October 2010 England Deaf Darby and Joan (EDDJ) club annual get-together at Pontins, Lowestoft, Suffolk. It was with EDDJ members in Lowestoft that the team was able to collect a considerable amount of the data needed to establish the normal profile for healthy older Deaf signers. 

Thanks to an award from the University College London (UCL) Beacon Public Engagement programme, four members of DCAL staff attended the October 2011 EDDJ annual holiday get-together, this time held in Prestatyn, Wales, to feed back our results from the previous year and to engage older deaf people with research at UCL using information stalls, posters and fun activities. A bonus of the visit was that the team was also able to complete data collection. Thanks to their willingness to take part in the research the team recruited 13 participants from the EDDJ member aged between 80-89 years. In all, the DwD project has been able to collect data from 226 Deaf people, with ages ranging between 50 and 89. This is an impressive achievement.

Engaging with research participants

The EDDJ event was a useful experience for the DCAL team in seeing how they can best work in engaging with the public so that research experiences can be rewarding for all involved. Based on feedback from EDDJ attendees from 2010 and a suggestion to be more interactive, the DCAL team did a “poll” with two tin cans and counters and asked people if they wanted the team to come back the following year and do more of the same. Happily 95 said yes and only 3 said no!

The DCAL staff took some posters and information materials with them to Prestatyn. They used the opportunity to present some early DwD findings to the attendees, who were keen to find out how the project has been progressing after meeting the team at Lowestoft the year before. The team also filmed a few people and asked what they thought of DCAL’s presence at the EDDJ and did a famous faces quiz which was very popular, with about 200 people taking part and with raffle tickets given for participation. At the end of the week DCAL held the raffle with shopping vouchers as prizes, and this event was also filmed. Finally the team provided the holiday-makers with general DCAL information such as newsletters and information about other studies, as well as giving out free UCL and DCAL pens, rubbers and chocolates.

The DCAL team also had some general leaflets about what to do if people are worried about their own memory, which include some useful contacts. They were also able to tell EDDJ about the Cognitive Disorders Clinic at the National Hospital for Neurology and Neurosurgery in London.

The DCAL team received a very positive response from people at the EDDJ and would like to thank both the EDDJ committee and attendees for their support. The team will look forward to providing full results in the near future.

Find out more, get involved!

To find out more about the Deaf with Dementia research project and to keep up to date with progress, please go to the project web site for information in both BSL and English.

In addition the project is presently seeking people from the general Deaf community who have been diagnosed with dementia (and their carers) to take part in an interview about their experiences of living with dementia day to day.  This is part of Study 2. See the website for details.

The Deaf with Dementia project

Objectives

The research project is:

• Developing a screening instrument for dementia in BSL that is culturally appropriate and normed for the Deaf population
• Investigating the experience of dementia directly with Deaf people and their carers in order to provide an evidence base for culturally sensitive service provision
• Working with the wider Deaf community and service providers (such as the Alzheimer’s Society) to better understand key features of acceptable and targeted information and support for Deaf people

The Government has released a policy document: Living well with dementia: A National Dementia strategy (published February 2009). The three broad objectives which underpin the Deaf with Dementia specific research studies were designed to dovetail with the National Dementia’s Strategy’s emphasis on: early identification; broad based community awareness; improved information provision; outcome driven service provision, where outcome also encompasses cultural sensitivity/acceptability.

Public understanding of why we are concentrating on Deaf people with dementia.
The National Dementia Strategy in England has reached an implementation phase and questions are being raised about the needs of specific populations who have dementia. The Deaf with Dementia project has been asked several times to explain what we mean by Deaf people and whether the work applies to everyone who might have a ‘hearing loss’. 

Principal Investigator of  the Deaf with Dementia project Professor Alys Young, from the University of Manchester, has supplied this briefing on behalf of the whole team, which policy makers and ministers have found helpful:

Definitions and populations

Although it’s true to say that around 1 in 6 people have a hearing a loss of some kind and the prevalence of this increases dramatically with age, deaf people and Deaf people (with a capital D) are very different populations. Generally speaking deaf (with lower case d) is used to refer to people who use spoken language, some of whom may have done this from childhood, and others who have lost their hearing gradually or indeed as a result of ageing.  Colloquially people use terms like ‘hard of hearing’ and’ hearing impaired’ to refer to these groups.  Deaf with upper case D refers to people who in audiological terms have a hearing loss but whose defining feature is the language they use and their cultural affiliation i.e. British Sign Language (BSL) users who regard themselves to be part of the Deaf community. Around the world, they are therefore often referred to as Sign Language Peoples, rather than Deaf people. This group is best considered to be a cultural/linguistic minority group in the UK whose issues of access and equality will encompass language rights and cultural equality (in the same way Welsh people’s do).  Population estimates for the UK range between 50 and 70,000 Deaf BSL users.

Language and literacy

For a variety of reasons early childhood deafness interferes with the usual processes of achieving literacy for many d/Deaf people (whether sign language users or spoken language users).  New advances in early identification of deafness, better early intervention, improvements in technological support (digital hearing aids and cochlear implants) and the recognition of BSL as a valid full language through which English might be acquired as a second language, are all promising much better literacy for d/Deaf people in the future.  However the current generation of older Deaf people (and many of those who use spoken language but have been deaf from early childhood,) are likely to have low levels of literacy.  The average reading age is around 9 years old.

Culture

The cultural claims of Deaf people are founded on strong evidence of traditions, norms of behaviour, shared histories, and more generally ways of thinking/attitudes that are clearly associated with life experience as a Deaf signing person within Deaf communities. This point is quite straightforward to grasp if one considers that any language will have an associated cultural group or indeed groups (e.g. French people and French Canadians).  The many centuries of non-recognition of the cultural and linguistic status of Deaf people has meant that these features have not been valued and understood. 

In the Deaf with Dementia research project, the culture of Deaf people is being investigated as the starting point in the identification of markers of acceptable and preferred outcomes in dementia care.